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From Inside the Puzzle: Raising a Child with Autism

Battling Guilt: When Parents Feel at Fault

Published October 8, 2009 3:33 PM by Devon Asdell
Logically, I understand that Autism Spectrum Disorder is still a scientific mystery. No one knows for sure what causes it. There are several strong theories supported by scientific data that point to the possibility of genetic predisposition, but it will likely be years -- and perhaps even decades -- before a definite "cause" of autism is finally nailed down.

Rationally, I know this. But as the parent of an autistic child, logic and rational thinking are often obscured by a much more powerful force: guilt.

I was only nineteen years old when I discovered I was pregnant. Even though I was an Honors Student midway through my second year of college, I confess that I barely knew what I was doing. While I had carefully considered all of the options available to young, unmarried women burdened with unexpected pregnancies, as soon as I saw the ultrasound image of the tiny speck of cells that was my unborn six-week-old baby, all I knew was that I wanted to bring that little speck of cells into the world, and all logical arguments were obscured by another powerful force: love.

As a young unmarried mother-to-be, I had a rather emotionally tumultuous pregnancy. While I had the love and support of my family, the father of my child was extremely inconsistent in his affections and intentions. I was still taking a full course load of college classes, working my way through the Honors Program, and the stress along with the pregnancy took its toll on my body. To make matters worse, my dorm building was deemed unsafe and was condemned while I was pregnant (fortunately, I was able to rely on the kindness of friends to house me for the remainder of the semester). I suffered from morning sickness, exhaustion, low iron, and depression. In hindsight, I have often wondered how all of these factors may have affected Aisling's prenatal development.

My labor with Aisling was also very long, intense, and problematic. I'd chosen to have Aisling at a Birthing Center with Nurse Practitioner midwives in attendance, because I'd wanted to have a completely natural, completely drug-free experience. Unfortunately, I was a 4'11'' tall young woman trying to give birth to an 8 lb 4.6 oz child. After twelve hours of intense and painful contractions with little progress, I was rushed to the local hospital where, after a few hours of rest, an epidural, and a few more unsuccessful tries, my daughter was finally born via emergency c-section. She had no post-natal complications, and there were no signs of fetal distress. She was extremely healthy, and after I had a couple of nights to recover from my surgery, they sent us both home.

In hindsight, Aisling's autistic traits were immediately apparent, even though I didn't realize it at the time. It was very difficult to get her to breastfeed, and even when she did she wouldn't make eye contact with me. She disliked being held, and she refused to sleep in the same bed with me -- she preferred being alone in her crib, without blankets, pillows, or stuffed animals. She would only wear soft pajamas -- any other type of clothing made her irritable and often led to tantrums. She was happiest when she was sitting by herself in her bouncy chair or her baby swing, and she took little interest in the people around her.

I didn't realize this at the time, of course. I was young, and this was my first child. She seemed to be hitting all the proper development benchmarks at the right times (sitting up, grasping, babbling, crawling, walking, making specific series of sounds) -- she was just missing a subtle social nuance that I simply did not recognize. She would babble, but not to try to interact with people. She would use repetitive sounds, but she wouldn't use them in a purposeful manner. I often joked that she really only saw me as a "walking milk factory," that she only loved me because I fed her but beyond that she had no use for me. In truth, and despite my best efforts, I never felt as if she wanted to "bond" with me in those early years. Looking back now, it's obvious why.

Still, there's the Guilt. I should have prepared better, I should have better insulated myself against emotional breakdowns during pregnancy, I should have gone to a mainstream doctor in a regular hospital, I should have noticed the precursors of my daughter's lack of interest in social interaction. In the books that I read, I am assured that this is a normal reaction, that many parents of autistic children feel as if somehow they are to blame for their children's condition. These books also assure me that such thoughts are irrational -- that while there seems as if there might be a correlation between ASD and difficult pregnancies/births, studies are still inconclusive in proving a cause-and-effect relationship.

The simple truth is that the cause of Autism is a mystery. As parents, we do the best we can with the resources we have to bring our children into this world, to keep them healthy, and to protect, guide, and love them along the way. As parents of children with autism, guilt is just one of the negative emotions we struggle with on a daily basis -- frustration, disappointment, and grief are also part of the package when dealing with a special needs kid. However, we are also blessed with the gifts of immense pride when our child progresses, absolute joy at the smallest accomplishments, constant amazement at the development milestones, and incredible delight at the unique quirks. Eight years ago, when I first heard the term "autism," I never dreamed my child would able to hold conversations, engage in imaginative play, or find boys cute. Every day with Aisling is an adventure -- one that is well-worth all of the tears, doubt, and guilt that come with the territory of being the parent of an autistic child.

posted by Devon Asdell

4 comments

A few years after I delivered my beautiful, autistic son I was talking with my midwife and sharing some of the guilt i had been feeling.  I told her how bad I felt about all the coffee I had drunk during my pregnancy.  She looked at me and said, "Lia, if you were talking about how you should have laid off the crack I would say, yes, you should have.  But coffee?  Stop being ridiculous!"  I've never forgotten that.  You love your child, so you inherently feel guilt, but the coffee didn't do it.  And if it did, I had no reason, at the time,  to believe that it would.  If I had known better, I would have done better.  I'll probably never know what caused it, but I know I never was careless with my son, before or after he was born.  Release the guilt.

Lia November 2, 2009 1:36 PM

Thank you so very much again for your feedback! Katherine and Wendy -- I think you are both right about the being injected with guilt during the birthing process! :-) It's great to know we're not alone in this and that many other parents deal with the same feelings I do. I appreciate your comments!

Devon Asdell October 12, 2009 8:38 PM
Knoxville TN

Devon - you have a really nice way of writing.  I can share with you that it doesn't matter with your child has a disability, a challange, or is typical in every way - we are moms and dads and grandparents and we'll always have some of the guilt with us.  I think Katherine said it best when she said she thought we might be injected with it during the birthing process. :-)

I have a child with numerous challanges and a"typical" teen - I have feelings of guilt for both of them for different reasons - like you, I know they are mostly irrational but we love our kids and will wonder "what if" I did or didn't do this.  I think the best we can do, is what you are doing, find out what will help and fight to make sure we get what our kids need.  You, though, are doing even more - you are sharing your story with others and that will help more than I think you will ever realize.

Wendy Hof, Pediatric - COTA/L, Birth-to-three October 11, 2009 9:54 AM
CT

Consider this one giant hug:))))  You are a brave woman and Aisling is a very fortunate child to have your love and support.  Parental guilt, unfortunately, is not uncommon among most parents.  I think we are injected with it during the birthing process!  My children have often said to me, "What do you mean you could have been a better parent?  We think you did very well."  And when I look at them, I realize, "Yes, I think I did."  Devon, your blog is so sincere and sensitive - there's no way you aren't a terrific mom!  Give Aisling a big hug for all of us moms out here doing our best to get by!!!!

Katherine Collmer, Pediatrics - OTR/L October 9, 2009 9:01 AM
Sandwich MA

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